by Abby Norman
“Jane doesn’t try to make my life worse,” I wrote, as though my pen had mightily heaved a sigh. “She just does.”
THE NEXT DAY, I WENT to see a new doctor, in a new office, in a new town, for a second opinion. Actually, to be precise, he was like the fifth or sixth doctor I’d seen by that point. I was actually being sent to him because my regular doctor had felt a lump in my lower back that she wanted him to look at.
Dr. Wagstaff was of dad-age and had the most friendly office staff I’ve ever encountered—then or since. I got the feeling that his receptionist hated leaving for lunch, lest she miss out on their witty repartee. I was ushered into an exam room, and he popped in moments later—a remarkably short wait time. He greeted me in a friendly, fatherly tone and proceeded to palpate a lump in my lower back.
“Lipoma,” he shrugged. “Not to be worried about.” He squinted at my record, then sat back in his chair. “But this… tell me about this pain you’ve been having. And the weight loss. And, well,” he said, flipping a page over, “everything else.”
So, I did. And when he inquired with genuine curiosity whether or not I had family to fall back on, I tried to make light of the situation by throwing in the anecdote about living within an unusual proximity to Cass’s staircase.
“So, basically, you’re Harry Potter—but with a lot of Anne Hathaway going on,” he said, gesturing vaguely to my overall appearance. I laughed when I wanted to cringe, because that was pretty much what I’d been taught about dealing with men in any situation, but certainly in those where I was clearly not the one in power.
Though he thought the lipoma wasn’t anything to bother with, Dr. Wagstaff could see that I was troubled by the other symptoms. He was more troubled by my life story, though, and wondered aloud—much to my horror—if my psyche was to blame. I don’t think he meant to be problematic when he posited this aloud to me, but he didn’t do so with very much tact.
“You were probably molested as a child and this is just your body’s way of trying to handle it,” he said as he made a note on my chart. As though it were a completely reasonable thing to say. I raised an eyebrow in contempt—surely the seat of my emotional discontent would not sequester itself to a single organ. And even if it had, perhaps this was not the time or the place to bring it up. Certainly not quite so casually.
Even if he believed I had psychosomatic problems, he did order some tests. First, he wanted to rule out some kind of intestinal parasite, so he prescribed me more antibiotics. He wasn’t entirely convinced it would help, but at the very least it was one more thing we could definitively rule out.
He couldn’t promise that he’d be able to help me, regardless of what the tests said. He stood as he ripped a slip from his prescription pad and handed it to me. “Your problem is complicated,” he said simply. “Just like you.”
To no one’s surprise, the antibiotics didn’t help. In fact, they made me feel a lot worse. Antibiotics, notorious for causing diarrhea, didn’t help me keep weight on, and I grew wearier and wearier as the weeks went by.
When I went to my next session with Jane, I told her what Dr. Wagstaff had said: that my problem was complicated and that I was complicated. She responded by admitting that she, too, at times, had wondered if she could truly help me. This caught me completely off-guard, and though it was humiliating to find myself doing so, I immediately began to cry. It wasn’t “close up on Meryl Streep’s face” crying, either. It was “I’m five years old and my life is hard” crying.
I wheezed and snotted until I collapsed in on myself, and on her stiff couch, because I finally realized that maybe all of this had been my fault. Maybe I had done something that I shouldn’t have done, or not done something that I should have done, and it had caused this. The harder I cried, the more convinced I became that it was the truth.
“I did this!” I announced, somewhat agog, and to no one in particular. “I made this happen—it was my fault, wasn’t it?” I buried my face between the pillows, not even bothering with tissues, which I did not feel I deserved.
“No,” she said quietly, but firmly. I heard her put down her pen and notepad. She cleared her throat, and though I couldn’t see her face, I heard something in her voice that made me pause and listen. “It wasn’t your fault. This isn’t your fault.”
DESPITE HAVING BEEN ON ANTIBIOTICS, I came down with a horrific bout of bronchitis in the weeks that followed, so I didn’t go to my next appointment with Jane or anyone else. I did, however, take my first job since I’d left school: a professional theater company I’d worked with my senior year of high school offered me a part in its spring show. I took it, desperate for the money—and for a chance to attempt to get back a semblance of the life I’d had before. Problems arose, mostly to do with my period. In order to avoid bleeding through my costumes, I wore bike shorts with two or three overnight Maxi Pads stuck in them, which felt like a diaper, but kept me from unwittingly inserting bloodshed into a scene in which it had not been scripted. The bleeding had gotten even worse since I’d gone off the birth control pill I had been taking, which the pharmaceutical company had suddenly stopped manufacturing. I couldn’t afford any of the other ones.
It was also during this time that I remembered that I’d have to drive to Sarah Lawrence to get all of my things from the dorm Rebecca and I had been sharing. Cass said she’d drive me, knowing that it would be both physically uncomfortable and emotionally precarious for me to go alone. When we arrived, I hugged Rebecca for a long time. All my old friends came to help us load up Cass’s truck with my things.
I had considered staying on campus long enough to visit with everyone. I could explain what had happened, go see my professors. But I was overcome with grief, the certitude that I would never come back, and it was crashing down on me as I watched all the pieces of me being stowed away in boxes—and not for the first time in my life. I’d moved so much over the past eight years that this shouldn’t have fazed me, but it felt different. I had wanted, more than anything, to be there. The best year of my life had been spent toiling around that campus, laughing until I cried late at night, coming back from the city on the Metro-North to Yonkers, beginning to figure out who I was and what I wanted to do with my life among some of the most vibrant and intelligent people I’d ever known. To be standing there, watching my entire life be packed up, felt like a terrible mistake. I swallowed down the urge to cry out, “No! Put it back! This is all wrong, I can still be here, I still want to be here!”
But it didn’t matter. It never had. What was happening within me was indifferent to the life that I wanted, that I’d worked so hard for. It watched, as my friends did, as I slunk into Cass’s truck and we drove away, back to Maine, all my chances lost.
CHAPTER 6
The patient is always the ultimate source of knowledge.
—Philip Bonnet, quoted in Terry R. Bard, Medical Ethics in Practice
NOÉMIE ELHADAD IS AN ASSOCIATE professor of biomedical informatics at Columbia University, a researcher, and an endometriosis patient. Five years after I was diagnosed with endometriosis myself, I would speak at the Endometriosis Foundation of America’s annual medical conference, which is where I met Noémie. On a subsequent trip to New York City, I arranged to meet up with her at a café in Columbus Circle, arriving covered in a sheen of sweat and regret after greatly overestimating how many blocks I could reasonably walk before I got nauseated. I was a little late, but from the beginning Noémie was generous not just with her time, but with her kindness.
We sat at a table near the back, hoping to keep the noise of the bustling café from cutting through my recording of our conversation. Two things struck me about Noémie within the first five minutes of our interview: she’s brilliant and pleasant, in equal measure, which is to say, exceptionally so. In my dealings with those in the upper echelons of academia, I have often found that the two are inversely proportional. So Noémie’s conversational, genuine, and witty demeanor was a welcome reprieve, not only from the scholarly gr
ind I’d been in, but from the nauseated and exhausted state I was in when we met. She spoke with the soft remnants of a French accent, and as soon became clear, it was as a young girl in France that her endometriosis began. The very fact that she had begun her journey with the disease so young was indicative of the fact that she had not grown up in the United States, but in Europe, where there seems to be a greater awareness of the condition, not to mention more equitable access to care.
“I was diagnosed at age fourteen without any problem,” she said. “There was not even a search for a diagnosis. It was like, ‘Thirteen, first period, crappy for like six months,’ and at fourteen, it was like, ‘Yup, that’s what you have.’”
“It’s not like it helped me to have known it earlier,” Noémie admitted, pointing out that in her case, despite having a name for her suffering and being started on the familiar course of treatments—including “a few crappy years” of Lupron—knowing sooner didn’t seem to stall the progression of the disease.
As she got older, she began to worry about her fertility. But she experienced firsthand, and debunked firsthand, two of the most prevalent myths about endometriosis: that she wouldn’t be able to get pregnant (she did), and that pregnancy would cure her endo (it didn’t). In fact, Noémie noted, it was a bit jarring for her to begin menstruating again while she was still breastfeeding her daughter—a time during which most women experience a normal bout of amenorrhea that’s mediated by lactation. Noémie’s menstrual cycle returned just one month after she gave birth. So did her endo symptoms.
As she recounted this story, we both laughed a bit. At the time, it felt like we were just throwing our hands up at the absurdity of it, but months later, as I listened to the tape of the interview, I can hear the sadness just below. We shared a kind of resolution to pessimism, and she openly admitted to that throughout our conversation.
Noémie channeled her frustration, however, seamlessly into her work. Her current research project at Columbia, the development of a tracking app called Phendo, was her attempt to quantify the unquantifiable, not only for herself, but for the collective. For science, and for patients.
One thing that’s missing from our understanding of endometriosis at every level, as Noémie pointed out, is its phenotype. For a disease like endo, a phenotype is the set of characteristics that can be observed: symptoms, test results, and microscopic evidence from tissue samplings, for example. Noémie and her team developed Phendo in the hope that they would be able to utilize a “citizen science” initiative to gather information about endo patients’ experiences, histology, and biomarkers. Unlike most tracking apps of its kind, it isn’t menstruation-centric, because endometriosis, Noémie believes, is not a menstruation-specific disease. “Many women in our online surveys are on hormonal treatments and have no period at all, but symptoms are still present. It’s not about the periods anymore, especially for women who have lived with endo for a while,” she later told me in an email, after Phendo had launched for Apple devices.
Noémie’s inclination to broaden the scope of discussion and research around endometriosis is important—in part because calling it a “female disease,” or a “period problem,” excludes entire groups of people who may have endometriosis but do not identify as female. Ren, for example, who is in his twenties, has stopped menstruating at this point in his transition because of hormone replacement therapy. But when he was still getting periods, which he recalls as being heavy and painful, doctors were reluctant to even consider endometriosis: they felt the hormone therapy required to facilitate his female-to-male transition should have “cleared it up.” When Ren was no longer bleeding, however, he still experienced severe, chronic pain. When he started researching his symptoms, endometriosis came up as a possibility. One that, because of how endometriosis is framed as a menstruation-dependent ailment, was difficult for him to reckon with. “Everything online talks about it as a woman’s disease, and I am a transgender man,” Ren told me. “So it feels very dehumanizing to read resources about it. And it’s already difficult enough to deal with.”
As it turns out, Ren does have endometriosis: it was surgically confirmed. Such confirmation is routinely difficult even for women to obtain, but as a trans individual, Ren found it especially difficult to access reproductive health care. “Now that I’ve been physically transitioning for a long time,” he said, “it’s made the process awkward and uncomfortable at best. Walking into or calling the OB/GYN always leads to a lot of scrutiny, confusion, or uncomfortable assumptions and interactions.” One time, for example, a nurse called and asked for Ann (his birth name)—and then asked if he was her husband.
Saying that endometriosis (like hysteria before it) is a disease exclusive to women, or even of uteruses, isn’t just noninclusive—it’s not true. Endometriosis has been found in men. Take this clinical portrait: an eighty-five-year-old man had an endometrioma in his abdomen, and for ten years, it was believed to be a carcinoma of the prostate. When they studied this patient’s chromosomes, he was phenotypically male, and, as it turned out, he did in fact have prostate cancer. But he also had an endometrioma that was independent of the cancer.
Another more recent case involved a fifty-two-year-old man who came to the emergency room with stabbing pain in his lower abdomen and pelvis which had been ongoing for about three weeks. He had a history of advanced liver disease and had had several surgeries to fix an inguinal hernia over the past two years. When a laparotomy was performed, a cystic mass was found attached to his bladder. The pathology revealed a lesion of thick, smooth muscle fibers with estrogen and progesterone receptors—consistent with endometriosis.
In both cases, the foremost question is: If endometriosis is supposed to be displaced uterine tissue, then how the hell does it wind up inside someone with no uterus?
One explanation might be found during fetal development. At around seven weeks, the reproductive systems of all fetuses look about the same. At this point, it could go either way: the fetus could develop male sex organs or female sex organs. They have both Wolffian ducts (male) and Müllerian ducts (female). Only one set of ducts will remain, and that’s determined by the interplay of genetics (X and Y chromosomes) and hormones.
We know that this process of sexual differentiation doesn’t always go off without a hitch: sometimes it’s incomplete, and a baby is born intersex, meaning that the baby has both kinds of chromosomes and reproductive organs. Sometimes male babies can be born androgen-sensitive, with more biologically female development, or females can be born with congenital adrenal hyperplasia, meaning that they produce too much cortisol, which behaves similarly to testosterone.
There are also cases where prolonged estrogen therapy—like in the case of prostate cancer—seems to lead to the finding of endometriosis in male patients. In a case from Japan, a sixty-nine-year-old man who had been undergoing hormone therapy for nine years to treat prostate cancer developed a sizable endometrial lesion in the structures surrounding the testes. His doctors hypothesized that the estrogen therapy had encouraged cells to undergo both metaplasia (meaning they changed type) and hyperplasia (meaning the therapy encouraged an increase in stromal cells).
There are at least six other reports in current literature of endometriosis in male patients undergoing long-term estrogen therapy for prostate cancer, including one man who was just twenty-seven years old. Six may not sound like a lot, but it’s noteworthy that in all six cases, endometriosis was accurately diagnosed, even when other conditions, such as cancer, were also present and could have confounded the diagnostic process. From the discussions of these studies, it appears that these men saw a resolution in symptoms attributable to endometriomas through surgery or the removal of estrogen therapy (they may have had lingering symptoms attributable to cancer or its treatment, of course). But the fact that they saw any improvement at all makes sense, because men are not estrogen-dependent creatures by nature. Women, however, do not have it quite so easy, starting from the moment they begin to express tha
t they are in pain. Especially pain related to their periods.
I FIRST GOT MY PERIOD on Thanksgiving day when I was twelve and a half, which was more or less the developed world average at the time for menarche. I was ripped, because Thanksgiving was the one day of the year that I was allowed to eat unfettered. Despite Mum’s disapproving glares, she could do nothing about it as I shoveled pie into my face. My father, too, enjoyed the holiday for this reason. You can only imagine my dismay when, by midmorning, before the food was even out of the oven, I found myself relegated to the bathroom with diarrhea. I was shaking from cramps and had a deep soreness in my upper thighs that almost felt like pulled muscles, except somehow deeper.
The cramping wasn’t unusual; I often woke up in the middle of the night with similar symptoms. I would awaken from a dead sleep and sit shaking violently in the bathroom for hours late at night, my legs so wobbly beneath me that when I finally dragged myself back to bed, I’d have to push my knees against the mattress. This all being what robust New Englanders would call a “gut’s ache,” I tried not to complain about it.
In hindsight, the somewhat cyclical nature of these spells may also have been a harbinger of what was to come once I started menstruating. The same symptoms afflicted me at various points in my hormonal cycle and, in fact, they are an extremely common, shared experience among endometriosis patients. Painful bowel movements are not a symptom that can easily go unnoticed, but it certainly isn’t widely discussed.
Since Mum and I were the only people not enjoying the Thanksgiving meal, she was the only one available to check on me. As upset as I was, and as uncomfortable as that made her, I always thought she might have been glad I’d given her a reason to leave the table. All my life I’d hoped, I suppose, that if it came down to food and me, she would not consider me the more odious to endure.